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Sophie: Interview 08

Age at interview: 20
Brief Outline: Sophie's older brother was diagnosed with Asperger syndrome when he was seven years old. He is now twenty-two.
Background: Sophie lives at home with her mum, dad and brother. She is a full-time student. Ethnicity/nationality: White British.

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Sophie’s brother is two years older than her and has Asperger syndrome. Sophie says her brother experiences high levels of anxiety and, as a result, home life is “quite tense”. Sophie and her brother are close and they often spend time “just chatting about his problems”.
 
Sophie’s brother attended a local special school. She described this as “the killing of him” as he felt he should have attended mainstream school and is now trying to “shake off his tag of special needs”. She believes that he would have thrived at mainstream school and, had he gone there, they, as a family, “wouldn’t have half the problems” that they have now. 
 
Sophie describes her brother as “really intelligent” with a “fantastic memory bank”. She explains how he has problems with his social and communicational skills and awareness of danger. She thinks he has “been let down quite badly” by Social Services because they have not found any jobs or further education for him. She found this “sad” as it distresses her mum who is “constantly ringing round people for answers”. She believes that there should be more support for parents of autistic children. 
 
Sophie thinks her experience has had a significant impact on her health. She has several conditions including an anxiety disorder, panic attacks and compulsive skin picking. She summarises her experience of having a sibling with Asperger syndrome as “quite tough and very emotional”.
 
 
 

Sophie says “you pretty much go out your way to make him comfortable with home life, it makes it...

Sophie says “you pretty much go out your way to make him comfortable with home life, it makes it...

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It’s quite tough and very emotional. You know, your emotions, you don’t know. One day is never the same. You know, every day’s different and you’ve just got to take that day, each day as it comes, because you know, every day [brother’s name]’s got a new routine that he has to do before he goes to bed, and you’re constantly adapting yourself. Like I can’t wear nail polish because [brother’s name] doesn’t like it. That’s something he can’t cope with. So, you know, you’ve got to go round his needs rather than your needs. You know, you’re just shaped round him, and I think, you know, that in itself is quite tough because some people just turn round and go, “Well I’m not doing that. I want to do what I want”. You know, I learnt the hard way by doing that. I was initially like that. But you learn, you quickly learn that that’s not the way forward. So you pretty much go out of your way to make him feel comfortable with life and the home life, it makes it easier.

 

Sophie talks about how it would be “amazing” if her brother did not feel anxious.

Sophie talks about how it would be “amazing” if her brother did not feel anxious.

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Yeah, because, you know, just for him to get out of bed, and say, “Oh I feel happy today. I don’t feel anxious or anything”. You know, that would be amazing for me and my Mum. That’s the least we’d expect from it. Do you know what I mean? Just trying, just to get him out of bed, and happy, I think is our ultimate goal any way, but, you know, if he could find employment, or friends or anything like that. That’s just bonuses really. As long as he’s happy and he gets out of bed and he’s doing something, whether, you know, it doesn’t necessarily have to be college or employment, but you know, if it’s walking next door’s dog and he’s happy, that’s all we can ask for really. But I think he wants more, we’ll have to do it gradually.

 

Sophie involves her brother in her social activities with friends.

Sophie involves her brother in her social activities with friends.

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If I’m going out with my friends, for like a night out or something, not on the town, or anything, but just to the cinema, and he feels comfortable with them, I’ll invite him along. Because, a close group of friends know about [brother’s name]. I explained, you know, what he’s like, and if he was to run away, you know, just to be calm round him, don’t judge him, don’t look at him, or treat him differently to anybody else. So he comes out with me on little trips out. But yeah, he likes doing that. He only does it occasionally, but if he’s in the mood it’s fine. So we go out.
 
That’s good. And you said there that you’ve told a close group of friends about him?
 
Yeah.
 
Why do you think you told them about him?
 
Just because [brother’s name] feels that he’s not accepted if someone knew that there was something wrong with him, they wouldn’t accept him, and I felt it was my, as a sister, to kind of just prompt them to say, you know, just don’t… because I think they feel quite bad as well, because they know there’s a problem, but they don’t feel they know how to react with it. Like how to treat him. And I just said, “Well treat him like a normal person”. Because he is a normal person. Just doesn’t function the way we do [small laugh].
 
And how do they treat him now?
 
They just treat him like one of the lads really. Like, they’ve all got mutual interests. Like my friend [friend’s name], he does karate, martial arts, and [brother’s name] absolutely adores that, although he hasn’t got the confidence to go to a group. Karate Kid films and stuff, they’ve got that in common and The Inbetweeners. They love that. So they’ll joke about that. And it’s nice. Yeah, I’m quite lucky to have a group of friends that understand [brother’s name]. 
 
Yeah, and have your friends always understood?
 
I wouldn’t say they’ve always, there’s been the few that have. But people that I’ve known that, you know, that have been to the house a few times, they wouldn’t speak to him, because they wouldn’t know how to treat him or whatever. And I found that quite sad. So, you know, every group of, well anyone that comes to the house that’s my friend, I’ll just prompt them before we go in, and just say, “You know [brother’s name], he is a normal person. He might seem a bit rude, but he’s not rude. That’s just him. And he doesn’t know how to socialise.” 
 
 

Sophie says she has learned a lot from her brother who reminds her that things could be worse...

Sophie says she has learned a lot from her brother who reminds her that things could be worse...

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He’s funny. [brother’s name]’s got a wicked personality. He’s really, he’s so funny. You know, if I’m feeling down about something, he puts things into perspective. Like he knows, you know, about world issues and things, and if I say, “Oh I’ve broken by nail or something.” He goes, “Sophie at least you’ve got…. You can look after your nails. You can grow them again. You haven’t got a disability where you can’t, you know, reproduce things that can be fixed.” Or if I say, “Oh my leg hurts.” He goes, “Sophie, at least you’ve got two legs to walk on.” And that kind of thing. So … yeah, he’s really good like that. And he’s so patient as well. Like with all these letdowns and stuff, he’s just taken it on the chin and been really polite with it as well. Because I wouldn’t have stood for what he’s stood for to be honest. So he’s taught me a lot as well, about life [laughs]. Yes.

 

Sophie talks about how stress has affected her.

Sophie talks about how stress has affected her.

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Yeah, big time, yeah. Because I, you know, my house is so tense anyway. If I go out, I’m tense, I’m still tense. So I find things difficult as well. But I’m getting better slowly, but it’s been quite tough, because you normally find in siblings that they have panic attacks and different medical things through stress and different things, and I also have CSP, which is compulsive skin picking, which a form of self harming as well. And I do that because I am so stressed. Because there’s been not really any help. For me as a sister, either there’s just nothing. 
 
And have you been able to get help with sort of the things that have arisen out of your experience? The CSP and so on?
 
I’ve had letters from doctors saying, “We could offer you some, you know, counselling and stuff”, but I don’t feel that that’s going to help me, because I can go to the counselling session, I can come home and the feelings are still the same, so I’m still going to be doing it, no matter, you know, what. So …
 
 

Sophie wondered how she would cope with having a child on the autistic spectrum when she was also...

Sophie wondered how she would cope with having a child on the autistic spectrum when she was also...

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Just thinking about the future again, do you ever worry that you might have children who have Asperger's Syndrome?
 
Yeah, I do, yeah, it worries me because it’s more common in boys than in girls, so if I have a son that’s got Asperger's as well how am I going to cope with the child and my brother with it as well? Yeah, I think it runs in my family as well so. I’ve got to be quite careful. I’m quite worried about it so my mum. But I would like kids yeah, but I don’t know what I’d do if... Obviously I’d just get on with it, but it’s quite sad knowing that I could be carrying a gene that could potentially, you know, upset another life really. So it upsets me. Yeah.
 
Yeah, and you don’t think it’ll affect your desire to have children?
 
I think it’s kind of made me think more into it, you know, if I really want kids, do I just go for it, or do I, you know, think about my relationship with my husband or anything like that, you know, it kind of, I don’t know, it makes you think about all sorts. Because I’ve seen how my Mum struggled and I don’t want, that sounds awful because I’m going to look after my brother, but she is a selfless person, given up everything and now she’s paying for it, but you can see it’s affected her and I don’t really want to be that unhappy when I’m older so, yeah. I think about it a lot. Yeah.
 
 

Sophie would prefer to look after her brother rather than put him in a home.

Sophie would prefer to look after her brother rather than put him in a home.

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Being able to cope with [brother’s name] and how he’s going to be as an … well older, he’s an adult now, but older. You know, if his needs change how do I, you know, how do I address them? And my mum she really knows how to handle [brother’s name] really well, because she’s with him 24/7. But I kind of worry about being up to her standard, and, you know, giving [brother’s name] the best possible, you know, that I can, the best possible chance, because I don’t want to let him down, because I know that he will never be able to work or anything for a while, until he gets help. So, you know, I want to go to university. I want to get a good job, so I can support him as well so… And obviously my parents if anything happened to them, I don’t know what I’m going to do to be honest. I’m really, really scared about that.
 
So do you think he’ll be your responsibility in the future?
 
Yeah, because people have said, you know, “You can put him in a home.” But he’s my brother and I don’t want to do that. I love him too much. So if I have a house, you know, I’ll have a little annex built or something. So he’s, or even if he’s just down the road, that I can get in with him within minutes if I needed to.
 
Do you think he would be capable of looking after himself or living alone?
 
I think that’s what we’re trying to aim, we’re trying to get him basic things like budgeting just how to look after himself. He’s really good at the drying up, so we’ve got that one covered. He’s got that covered. But it’s just little things we’re trying to shape up for him to be able to do, if he was to leave home and live on his own. But he couldn’t do that at the moment. But hopefully one day for his own independence and sake he could hopefully do it. But, if not, then it’s not a problem, he’s my brother. So he will be at home with me.
 
 

Sophie feels “sad carrying a gene that may upset another life”.

Sophie feels “sad carrying a gene that may upset another life”.

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Just thinking about the future again, do you ever worry that you might have children who have Asperger's Syndrome?
 
Yeah, I do, yeah, it worries me. Because it’s more common in boys than in girls, so if I have a son that’s got Asperger's as well how am I going to cope with the child and my brother with it as well? Yeah, I think it runs in my family as well so. I’ve got to be quite careful. I’m quite worried about it so my mum. But I would like kids yeah, but I don’t, I don’t know what I’d do if... Obviously I’d just get on with it, but it’s quite sad knowing that I could be carrying a gene that could potentially you know, upset another life really. So it upsets me. Yeah.
 
Yeah, and you don’t think it’ll affect your desire to have children?
 
I think it’s kind of made me think more into it, you know, if I really want kids, do I just go for it, or do I, you know, think about my relationship with my husband or anything like that, you know, it kind of, I don’t know, it makes you think about all sorts. Because I’ve seen how my Mum struggled and I don’t want, that sounds awful because I’m going to look after my brother, but she is a selfless person, given up everything and now she’s paying for it, but you can see it’s affected her and I don’t really want to be that unhappy when I’m older so, yeah. I think about it a lot. Yeah.
 
 

Sophie attended Young Carers and found this helpful. She finds that life is very stressful at...

Sophie attended Young Carers and found this helpful. She finds that life is very stressful at...

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No. I went to Young Carers when I was about eleven, twelve, thirteen. I went for a good few years. You know, that’s good in itself, and that’s just time where you can take a step back and go and mix with people that, you know, understand you and what you’re going through, but now as I’m 20 there’s nothing really for me, that I know about. I haven’t been, you know, forwarded information. A lot of people have got my number, because they know me as [brother’s name]’s sister, but nothing. I’ve done speeches for people, but there’s only so much you can do really, and no one ever gives you anything in return. So it’s quite, its difficult.
 
What support would you like to have?
 
I don’t know. Just more emotional support really. Someone that I can go to that knows all about Asperger's Syndrome and how hard it is for siblings. Just so I can go and talk about it really, because I feel, all the anxiety and pressure in my house is too much and sometimes I just go up to my room and cry my eyes out. And that is my counselling to myself. But there’s no one I can talk to, that can, you know, reassure me and say, “You know, there is such and such.” “That there is a light at the end of the tunnel for you.” But… there is nothing like that here at all. You know, it’s quite sad, because I’m sure, a hundred percent, that I’m not the only one in this position who needs help as a sibling. So…
 
 

Sophie believed that there should be more support for parents as “they take a lot of the...

Sophie believed that there should be more support for parents as “they take a lot of the...

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I don’t know really like, I don’t know, I think there should be like more support for my mum definitely, because you know, she’s cared for my brother for 20 years, 22 years now. And she wants to see more of life, but there hasn’t been an opportunity where she can, not leave [brother’s name] in respite or anything like that, but where she feels comfortable to go off and do things. Because my mum, she’s quite selfless. She’s give, she’s given up everything for me and my brother. And I think, you know, she deserves more. You know, she doesn’t get credit for what she does, and she does an amazing job with my brother. And I think that there should be more support for definitely parents with, you know, autistic children. Because they do a lot, they take a lot of the emotional strain and especially when they... son/daughter hasn’t got anything. It’s extra pressure on them, and they need time out as well, because I see how it affects my parents’ relationship. They’re not as close as they used to be, yeah, they’re quite, there’s always arguments or disagreements. And it’s quite tense. So I think there should be more support for parents.
 
What kind of support?
 
I think there should, I don’t know really, just like emotional support, you know, my mum can go to somebody who knows about Asperger's or has been in a similar situation. Or just, you know, peace of mind in knowing that [brother’s name]’s in a place where he’s safe. You know, he’s going to be looked, not looked after in a sense, but where she can leave him, and not worry about where he is and what he’s doing. You know, we could have left that with extended family members, but they don’t help so, you know, my mum worries about him being here, you know, if he’s left because he likes to do his soup and stuff, so whether he’s left the hob on or … you know, I want her to be able to go out and see a bit of life, because she’s 58 now, and she’s really conscious of her age now. And it’s sad for me to see that, because I’m going off to college you know, going about my own business and she’s here and, you know, my mum had her first child at eighteen, and she hasn’t really had a life, so I think it would be nice if she could have peace of mind knowing that [brother’s name]’s alright. And she can pop off and do what she wants. Yeah.
 
 

Sophie felt that the information she received was insufficient.

Sophie felt that the information she received was insufficient.

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My parents gave me books on it. I read them through, but I wouldn’t necessarily... I didn’t want to believe it, kind of. I didn’t want to believe that [brother’s name] had a problem, but when he was diagnosed I was only five, and I was just starting primary school, and you know, that’s when you build up friends for life, and you go out on, you know, sleepovers and stuff. But I didn’t really have that. I had no information really, apart from the books that my parents gave me, I think. It’s too in depth for a five year old to take all that on board and... But I picked it up pretty quickly just through watching [brother’s name], and being indoors all the time, and watching what he’s like. And his behaviour patterns and stuff.
 
So he has sort of educated you about it?
 
Yeah. You, you know, people can write books and books on Asperger's Syndrome, but you have to live with it to understand it, and to, I don’t know, to really grasp it. You can study it for years and years, but unless you live with it, you won’t know half of it so…
 
 

Sophie wants someone to help her brother find something to do that will give him a purpose.

Sophie wants someone to help her brother find something to do that will give him a purpose.

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Well the first thing I’d say, is, “Are you being serious about helping?” [small laugh]. Because we’ve been so much, you know, where people have said, “Yeah, we’ll help you, and nothing’s been done. So obviously you’d make sure that they want to help, but, you know, just to look at [brother’s name], [brother’s name] as an individual not a group of Asperger people, what they think they might need, because they’ll all different. So as long as they look at [brother’s name] as a person and look at his specification, like what he likes and what he doesn’t like, and what he can cope with, and his anxiety levels, and if they can work around that, and then find him something that he can do, then yeah, that’d be good. Just to get him out of the house, really have a purpose to get up. Because he gets up at whatever time he wants really. You know, he doesn’t lie in bed till like one o’clock in the afternoon, but, you know, half nine, ten o’clock, you know, where he could be in a job or college or something. He isn’t. So as long as there’s a purpose to get up in the morning, you know, feel good about himself that he is alive. He’s healthy, you know, he’s a healthy boy, but he’s just got a condition which stops him doing so much and it’s really sad.

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